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Friday, October 5, 2012
Down Syndrome Awareness Month
October is National Down syndrome Awareness Month! If you click in any of my friends blogs, there will be tons of folks doing 31 for 21, or a post a day for Down syndrome. Honestly, we are doing well to have two posts in one week here. LOL!
I am going to leave you with some videos. Get out the tissues!
And this...This is a traveling gallery that is going to be turned into a coffee table book. We know a few of these beautiful faces!
This one too!
Tuesday, October 2, 2012
We're still here!
I'm just such a bad blogger since FB has come around. I NEED to get better at this.
Lots of stuff going on, so here is the run down:
We have moved. We all like the new house, although I am STILL unpacking. Getting rid of tons of stuff. It's amazing how much we accumulate, but even more amazing how much Christooher has accumulated! Holy cow! There is no mistaking, this is HIS house.
We are still going to Chicago for more of our docs., and therapy once a month. I finally got smart with the doctors appointments, and scheduled a week long block of them. The only thing is, there were too many for one week. We went in September and will go again in October.
Christopher is progressing quickly. Not sure what has changed, but he has gained 12 lbs since December. That may not seem like much, but for a kid who hovered between 21 and 24 lbs for 6 1/2 years, that's a HUGE deal. He's a whopping 33 1/2 lbs now!
He's babbling a lot, with some words mixed in. Some he still says regularly, others are new or he repeats once and never says again. He's also moving a LOT more. Eight years in and we are finally having to baby proof. :) He's working on crawling up the stairs, although he's not too thrilled about coming back down again. He would play on the stairs all day long if we let him. He's sitting by himself all the time. He hasnt been in his little chair for months. He's trying to pull up on the entertainment system and the couch. Problem is, he is sooooo long. He got himself stuck in his bed the other day. It is a modified hospital bed, and he fell through the gap created between the end of the mattress and the footboard when the foot of the bed is raised. I heard a thump, and went in to find him hanging by his neck in the opening. It was pretty scary. We called the company who made the bed and they sent us a new one for free! (I will do a post on that later.)
Otherwise, we are still fighting the state over the waiver. It is even more scary with the election. If you educate yourself about nothing else with this election, educate yourself with the facts about how the vote will impace healthcare. Be afraid.....very afraid!
I think that is about it for now. Hope all of our bloggy friends are doing well. I read everybody's blogs, just hit or miss whether Blogger will let me comment or not. :(
Lots of stuff going on, so here is the run down:
We have moved. We all like the new house, although I am STILL unpacking. Getting rid of tons of stuff. It's amazing how much we accumulate, but even more amazing how much Christooher has accumulated! Holy cow! There is no mistaking, this is HIS house.
We are still going to Chicago for more of our docs., and therapy once a month. I finally got smart with the doctors appointments, and scheduled a week long block of them. The only thing is, there were too many for one week. We went in September and will go again in October.
Christopher is progressing quickly. Not sure what has changed, but he has gained 12 lbs since December. That may not seem like much, but for a kid who hovered between 21 and 24 lbs for 6 1/2 years, that's a HUGE deal. He's a whopping 33 1/2 lbs now!
He's babbling a lot, with some words mixed in. Some he still says regularly, others are new or he repeats once and never says again. He's also moving a LOT more. Eight years in and we are finally having to baby proof. :) He's working on crawling up the stairs, although he's not too thrilled about coming back down again. He would play on the stairs all day long if we let him. He's sitting by himself all the time. He hasnt been in his little chair for months. He's trying to pull up on the entertainment system and the couch. Problem is, he is sooooo long. He got himself stuck in his bed the other day. It is a modified hospital bed, and he fell through the gap created between the end of the mattress and the footboard when the foot of the bed is raised. I heard a thump, and went in to find him hanging by his neck in the opening. It was pretty scary. We called the company who made the bed and they sent us a new one for free! (I will do a post on that later.)
Otherwise, we are still fighting the state over the waiver. It is even more scary with the election. If you educate yourself about nothing else with this election, educate yourself with the facts about how the vote will impace healthcare. Be afraid.....very afraid!
I think that is about it for now. Hope all of our bloggy friends are doing well. I read everybody's blogs, just hit or miss whether Blogger will let me comment or not. :(
Monday, June 4, 2012
Still Fighting....
Sorry for the lack of posts, again. Blogger locked me out!
Well, the fight still continues for the children on the Medically Fragile and Technology Dependent children's Waiver (MFTD) in IL. Last week, the State legislature passed SB 2840. The Governor is set to sign it in to law sometime this week.
This bill effectively kicked many of the children on the MFTD waiver off, but instituting income caps to qualify. The entire point of the waiver is to WAIVE income requirements for services. Those who are left to qualify are going to have to pay between 5 and 20% of our income - anywhere from $400 to $1200 per month on TOP of insurance premiums, out of pocket costs, and regular bills.
The result of all of this is that many families are going to have to chose between going bankrupt, divorcing, quiting jobs, taking major pay cuts, or putting their children in hospitals. All of this is blatantly illegal under the Olmstead ruling. In a nutshell, The Supreme Court ruled that if services were available in a community setting, and the person WANTS to be in the community, it is illegal to force institutionalization on them. A good friend has written a great article explaining Olmstead for Complex Child Magazine here.
Our next step now is to convince a Senator to introduce a rider bill. This is essentially a separate bill that will say that any changes to the MFTD Waiver in SB 2840 is null and void. So far, we have had no luck.
Failing that, our last gasp are lawsuits. It is pretty cut and dried that we would win our lawsuits just on the Olmstead violations alone, however, the State of Illinois is currently being investigated by the Justice Department for disregarding rulings in several other Olmsteasd cases. They are currently in contempt of court and have no intention of following court orders.
We need help getting the word out to media about the back room deals and sacrificing of these children and their families, for others' personal agendas and biases. If you have any National Media contacts, please send them our way.
To educate yourselves more, please visit www.saveMFTDWaiver.com
One note here, there are MANY States poised to make the same cuts. California is well on the way. If nothing happens to the State of Illinois, be prepared for YOUR state to act as well.
Well, the fight still continues for the children on the Medically Fragile and Technology Dependent children's Waiver (MFTD) in IL. Last week, the State legislature passed SB 2840. The Governor is set to sign it in to law sometime this week.
This bill effectively kicked many of the children on the MFTD waiver off, but instituting income caps to qualify. The entire point of the waiver is to WAIVE income requirements for services. Those who are left to qualify are going to have to pay between 5 and 20% of our income - anywhere from $400 to $1200 per month on TOP of insurance premiums, out of pocket costs, and regular bills.
The result of all of this is that many families are going to have to chose between going bankrupt, divorcing, quiting jobs, taking major pay cuts, or putting their children in hospitals. All of this is blatantly illegal under the Olmstead ruling. In a nutshell, The Supreme Court ruled that if services were available in a community setting, and the person WANTS to be in the community, it is illegal to force institutionalization on them. A good friend has written a great article explaining Olmstead for Complex Child Magazine here.
Our next step now is to convince a Senator to introduce a rider bill. This is essentially a separate bill that will say that any changes to the MFTD Waiver in SB 2840 is null and void. So far, we have had no luck.
Failing that, our last gasp are lawsuits. It is pretty cut and dried that we would win our lawsuits just on the Olmstead violations alone, however, the State of Illinois is currently being investigated by the Justice Department for disregarding rulings in several other Olmsteasd cases. They are currently in contempt of court and have no intention of following court orders.
We need help getting the word out to media about the back room deals and sacrificing of these children and their families, for others' personal agendas and biases. If you have any National Media contacts, please send them our way.
To educate yourselves more, please visit www.saveMFTDWaiver.com
One note here, there are MANY States poised to make the same cuts. California is well on the way. If nothing happens to the State of Illinois, be prepared for YOUR state to act as well.
Wednesday, February 15, 2012
WE NEED YOUR HELP!
Hello all! I will be doing a bigger update on Christopher soon. Right now, we NEED your help!
While Christopher has been doing well and steadily improving, he still has many medical needs that we have to attend to. Because his medical issues are so complex, he qualifies for something called the Medically Fragile and Technology Dependent Children's Waiver. This waiver eliminates the income requirements for a medical card for HIM (not the entire family), to cover the things that insurance does not. While we have primary insurance, we also have HUGE copays, deducatbles, and most of the most expensive items Christopher needs for day to day living are not covered by insurance at all. When you are talking $4000 worth of formula a month, those bills add up quickly.
This waiver also helps to provide nursing hours and our super nurse, Darcey. Without ursing, I literally would not get any sleep. Christopher alarms, or wakes up, or gets tangled, or, or, or about every twenty minutes while he is asleep. Between seizures, suctioning, silent reflux and aspiration, oxygen needs, apnea, and more, the night shift is almost more active than the day shift!
The State of Illinois is broke. I am not even going into that. It is a whole different post. One of their super ideas to cut costs is to eliminate this waiver for children like Christopher! There are only between 400 and 600 children on this waiver at any given time. Many are much more complex than Christopher. One thing we all have in common is that if we lose this waiver, we will all have to decide between hospitalizing our children permently, admitting to a nursing home, or keeping them at home and ealing with the financial fallout of catastrophic medical bills and eventually have to go with one of the other two options in the end. Ironically, once our children are hospitalized, they automatically qualify for a Medical card! The important fact to remember is that just a room in most Children's hospitals that can handle our kids runs about $55,000 per MONTH. JUST THE ROOM! The State spends an average of $188,000 per YEAR on our children currently.
We also have the added benefit of keeping our children at home with their families, where they belong, out of the hospital for minor illnesses that we can handle at home with nursing help, and SAVING MONEY to boot! It makes no sense why they want to cut our kids other than they see this as a population who will no fight back.
This is where we need your help. Please click on the link at the top of this post and sign the petition. It takes all of 30 seconds.
We also ask that you blog, tweet, and share with all of your friends, groups, churches on facebook, etc. The State responds to volume not common sense. The more people we have letting them know that they are watching, the less likely they are to endanger the lives of at least 500 Illinois children with complex medical needs.
Two more points that need to be made here: Last month, the Special Needs Community came together on behalf of ONE child who was given a death sentance by a transplant program. There were over TWENTY THOUSAND signatures gathered on behalf of that child, and the decision was reversed. Right now, the lives of over 500 children hang in the balance. We have less than 400 signatures currently. Please tell me the Special Needs Community is NOT that fickle., that ALL of our children matter and are loved. Otherwise, we are no better that those denying services. If ou aren't part of the solution, you are most definately part of the problem.
The last point is that you do NOT have to be from Illinois or even the United States to sign this petition. Again, the State responds to volume and for every signature a letter is generated and sent to the Director of Health Services in the State of Illinois, one of the champions of this idea. More than that, there are several other states who are eyeing the outcome of this manuver. Several have already sited the potential loss of the waiver. If you think this won't affect you, think again. Hello slippery slope!
Thank you in advance for your help. We thank you and the families of the other 500 children this affects thank you as well!
Monday, December 19, 2011
Happy Birthday Little Man!!!!!!
SUCH a long time between posts! Soooooo much going on, but it will have to wait for another day.
I can't believe another year has passed already. It seems like you were just a peanut yesterday.
This past year has been an exciting one for you. You have made sooooo much progress with your PT and developmental areas! You are sitting up on your own, nice and straight. You are crawling and talking more. You are getting used to your iPad and are starting to realize that "school" can be fun. You went swimming for the first time, and rode a trike for the first time too! You LOVED it!
Most notable is that you have suddenly started gaining weight and growing!!! In the last 3 months, you have gained FOUR POUNDS and now top out at 28 pounds, 11 ounces. The most you have ever weighed with REAL weight. You have also grown 2 1/2 inches and are now 42 1/2 inches.
You are now starting to do typical "toddler" things.....crawling, exploring, getting into things. You are communicating more and letting your oppinion be known.
We can't wait to see what the next year brings for you. You seem to be loving the new house. We will have your stander soon, and hope to get a trike for you this summer. We will continue working with the iPad for both school and communication.
Happy Birthday Sweet Boy!!!!! Mommy and Daddy are so proud of you. Have a great year!
Saturday, September 10, 2011
So long old Friend!
 |
| Michael Hart March 8, 1947 - September 6, 2011 |
He passed away Wed, and I will miss him dearly. He was a bit..um...cantankerous, but we always got along well. He was not one to suffer a fool, LOVED a debate, and respected a person's intelligence over race, creed, income, or education level. He has single-handedly done more for literacy in the past 15 years than anybody I know of. He is the inventor of the e-book, and founder of Project Gutenberg - the LARGEST collection of books online.
He was an awesome mix of geek and librarian. Most of my computer knowledge came from him. As did the willingness to give any book a chance. I promised him that I would start volunteering again after we moved to our new house. I'm sad that he won't be there to give me my assignments. I am proud to have been a part of Project Gutenberg, and proud to have been able to call Mike a friend. On behalf of book lovers, teachers, and homeschoolers around the world - Thank you and Well done Mike! R.I.P.~
Please go visit http://www.gutenberg.org/
Wednesday, July 20, 2011
Amazing and Grateful......
Hello all! So much to report today.
If you remember from our last post, there was a bit of drama going on in the Special Needs Community in the last few weeks. Serious drama - that involves missing awards, money, and the police.
Par for the course, when things get tough, Special Needs parents and friends get tougher! If you remember, I told in the last post how several parents and some of their friends were trying to figure out a way to get the families who "won" that giveaway, their iPads. Enter Mission: iPossible!
We are grateful and humbled to announce that Christopher was selected to receive the FIRST iPad that they were able to obtain!!! It has been sooooooo hard to keep it a secret this week. We are beyond thrilled to have received the iPad. Christopher is not too sure what to make of it, but was VERY happy to find the entire 1st season of Blue's Clues installed as a reward. LOL! As I have said to part of the Mission: iPossible Team, thank you just doesn't seem enough.
I know that these folks will work hard to try to verify the original winners and obtain iPads for all. I know they are going over and above to make SURE that people know they are on the up and up. I HOPE that they are all able to have sweet, sweet dreams knowing that they have done God's work here. We also want to thank the other WINNERS for their prayers and gracious comments throughout all of this. Many asked or commented how happy they were that Christopher was the first awardee. That means the world to us. It also means that we will be helping to do what we can to make sure the others get this chance as well!!!! :)
I know that sounds crazy, but we really had no other way to obtain an iPad. Christopher's will be used more as a communication device, to help with homeschooling, and to record therapy and doctor's visits without having to drag a bunch of paraphanalia along. This isn't the be all, end all to homeschooling or communication - but it frees up DME money so that we can get things like a stander or gait trainer.
As we stated in an e-mail to Mission: iPossible Team, Christopher has already shown that he knows more than he has previously let on. I should back up a bit for the new folks here. Christopher, in addition to Down syndrome, has had one or more strokes, heart defect, Infantile Spasms, and has crashed many times ending up on the vent. All of this has caused a considerable amount of brain damage - between 40% and 60% - according to those in the "know". We have been told that he SHOULD be in a persistent vegetative state because of the way his brain looks. Obviously, he's not. We are in uncharted waters here. Christopher is smart (I'm not just saying this because I am his mother. Ha! Ha!). He is smart enough to know NOT to let us know everything he knows, because it means more work for him! The iPad helps us break through that barrier.
We also took the iPad along to therapy and his neurologist appointments today. It kept him entertained (doing "school"), served as a camera and video camera, AND his neurologist was so impressed! It was the closest I have ever seen him to crying. :)
So once again - THANK YOU, THANK YOU, THANK YOU!!! If you would like to follow along, or if you would like to see how YOU can help, head on over the the Mission: iPossible blog. You won't be sorry that you get involved in this one. :)
Keep an eye out for more pictures and videos of Christopher using his iPad and other devices!!! Thanks!
Hugs!
Steph and Christopher
BTW - This gift means even more to us know that it came from a firefighting family!!!! Pretty much everybody on my Mom's side of the family have been firefighters. My Grandpa was Assistant Chief in our town. Thank you again!
If you remember from our last post, there was a bit of drama going on in the Special Needs Community in the last few weeks. Serious drama - that involves missing awards, money, and the police.
Par for the course, when things get tough, Special Needs parents and friends get tougher! If you remember, I told in the last post how several parents and some of their friends were trying to figure out a way to get the families who "won" that giveaway, their iPads. Enter Mission: iPossible!
We are grateful and humbled to announce that Christopher was selected to receive the FIRST iPad that they were able to obtain!!! It has been sooooooo hard to keep it a secret this week. We are beyond thrilled to have received the iPad. Christopher is not too sure what to make of it, but was VERY happy to find the entire 1st season of Blue's Clues installed as a reward. LOL! As I have said to part of the Mission: iPossible Team, thank you just doesn't seem enough.
I know that these folks will work hard to try to verify the original winners and obtain iPads for all. I know they are going over and above to make SURE that people know they are on the up and up. I HOPE that they are all able to have sweet, sweet dreams knowing that they have done God's work here. We also want to thank the other WINNERS for their prayers and gracious comments throughout all of this. Many asked or commented how happy they were that Christopher was the first awardee. That means the world to us. It also means that we will be helping to do what we can to make sure the others get this chance as well!!!! :)
I know that sounds crazy, but we really had no other way to obtain an iPad. Christopher's will be used more as a communication device, to help with homeschooling, and to record therapy and doctor's visits without having to drag a bunch of paraphanalia along. This isn't the be all, end all to homeschooling or communication - but it frees up DME money so that we can get things like a stander or gait trainer.
As we stated in an e-mail to Mission: iPossible Team, Christopher has already shown that he knows more than he has previously let on. I should back up a bit for the new folks here. Christopher, in addition to Down syndrome, has had one or more strokes, heart defect, Infantile Spasms, and has crashed many times ending up on the vent. All of this has caused a considerable amount of brain damage - between 40% and 60% - according to those in the "know". We have been told that he SHOULD be in a persistent vegetative state because of the way his brain looks. Obviously, he's not. We are in uncharted waters here. Christopher is smart (I'm not just saying this because I am his mother. Ha! Ha!). He is smart enough to know NOT to let us know everything he knows, because it means more work for him! The iPad helps us break through that barrier.
We also took the iPad along to therapy and his neurologist appointments today. It kept him entertained (doing "school"), served as a camera and video camera, AND his neurologist was so impressed! It was the closest I have ever seen him to crying. :)
So once again - THANK YOU, THANK YOU, THANK YOU!!! If you would like to follow along, or if you would like to see how YOU can help, head on over the the Mission: iPossible blog. You won't be sorry that you get involved in this one. :)
Keep an eye out for more pictures and videos of Christopher using his iPad and other devices!!! Thanks!
Hugs!
Steph and Christopher
BTW - This gift means even more to us know that it came from a firefighting family!!!! Pretty much everybody on my Mom's side of the family have been firefighters. My Grandpa was Assistant Chief in our town. Thank you again!
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